Tom Doyle is an alchemist—he has mastered the art of transforming a negative into a positive. After recovering from a deadly systemic staph infection brought on by chronic shoulder dislocation, he ran his first marathon (in an impressive four hours) in 1992. When his shoulder worsened to the point of disability, required fusion surgery and triggered the loss of his plumbing business, he enrolled in college at 37 (earning straight A’s), became an attorney, passed the Massachusetts and New Hampshire Bar Exams and established a robust law practice.
It comes as no surprise, then, that when symptoms of a pinched shoulder nerve in 2013 instead revealed a walnut-sized pituitary brain tumor, Tom, now 57, was determined not to let it get the best of him.
He asked his general practitioner, Dr. Philip Tavano, for a referral to Boston and soon found himself in the office of Dr. Ronald Lechan Co-Director of the Hypothalamic and Pituitary Disease Center at Tufts Medical Center. “As it turns out, it’s the best place on the planet to go for a pituitary disorder,” he says.
Tom had a prolactinoma—a pituitary adenoma, or tumor, that secretes prolactin, the female hormone responsible for producing lactation in breastfeeding women. “Up to 20% of the population have pituitary adenomas,” says Dr. Lechan, “though the majority are very small and don’t secrete hormones or cause problems. When the pituitary adenoma enlarges and causes compression of local structures or secretes hormones, it needs to be treated.”
“I [felt like I] went through menopause,” says the self-described “man’s man,” rattling off a laundry list of his progressing prolactinoma symptoms: nausea, dry heaves, irritability and incessant crying. “I wanted to put on a New England Patriots cheerleading outfit and run around with pom-poms,” he jokes, “but other than that, I was fine.”
The first approach: Drug therapy
“Prolactinomas are very responsive to pharmacologic therapy, so surgery and/or radiation therapy are rarely required,” continues Dr. Lechan. In June 2013, he therefore prescribed Tom cabergoline, which effectively reduces these tumors in 85% of patients.
“Tom had a very nice biochemical response with his prolactin level falling from over 2000 to 400,” Dr. Lechan says, “and I suspect if he were able to tolerate the medication, his prolactin may have fallen into the normal range,” which for a man, is below 20.
But Tom did not tolerate the medication. He experienced an intense reaction including severe upset stomach, headaches, fatigue and general malaise.
Nine months later, with no abatement of side effects, Tom returned to Dr. Lechan and asked how long he would have to continue the medication. When Dr. Lechan replied that he may have to remain on it permanently, Tom begged an alternate treatment avenue. “I said, I just can’t live the rest of my life like this,” Tom recalls.
A new treatment plan
The next day, Tom received a call from Dr. Carl Heilman, Neurosurgeon-in-Chief at Tufts MC, who discussed removing his prolactinoma.
The surgery was risky. Tom’s tumor encapsulated his internal carotid artery, which supplies blood to the brain. Dr. Heilman therefore proposed a two-fold strategy: he would surgically remove the bulk of the prolactinoma, and later, Dr. Julian Wu, Chief of Neurosurgical Oncology and Co-Director of the Boston Gamma Knife Center at Tufts MC, would eliminate the remaining portion using the Gamma Knife—a revolutionary technology which focuses 192 gamma rays on its target, delivering pinpoint-precise treatment while harmlessly bypassing nearby tissue.
“Typically, Gamma Knife radiosurgery is not needed,” says Dr. Heilman, who evaluates roughly 40 pituitary patients annually and operates on approximately 25. “We reserve it for the rare case where we cannot get the entire tumor out during surgery.” Tufts MC hosts Boston’s only Gamma Knife Center, and the only such facility in Northern New England.
Interdisciplinary surgery
In April 2014, Tom underwent his three-hour operation led by Dr. Heilman, whose interdisciplinary team included an otolaryngologist, an anesthesiologist, residents representing otolaryngology, neurosurgery and anesthesiology, plus a scrub technician and circulating nurse. “The otolaryngologist placed an endoscopic in the nostril and made an opening into the sphenoid sinus in the back of the nose,” recalls Dr. Heilman. “I then worked through the nostril to open the floor of the sella turcica, which is the space containing the pituitary adenoma and the pituitary gland,” to dissect and remove the tumor.
Though the endoscopic procedure was minimally invasive, upon waking, “I felt like I went 15 rounds with Muhammad Ali and lost,” laughs Tom. His initial surgical soreness was expertly managed at Tufts MC, where he remained for three nights of inpatient recovery. “That facility is incredible,” he gushes. “They have a whole ICU unit for neurosurgery. It was unbelievable. The medical staff is all over you all the time—they can’t do enough for you. They want your stay to be as pleasant as it can be considering the circumstances.”
When he returned home, “I was out of commission for two weeks. I couldn’t drive. I didn’t feel good,” he remembers. From the outside, no one could tell anything was different, and though internal discomfort and sinus trouble lingered for four months, he acknowledges, “it was all normal.”
Laser-focused
Once that four-month healing period passed, during which he was closely followed by Dr. Lechan, Tom returned to Tufts MC for Dr. Wu’s outpatient Gamma Knife treatment. “The radiation department was extremely efficient, gracious and accommodating,” says Tom, adding that hardest part was being fitted with a stereotactic head frame, necessary to immobilize his head and allow for absolute accuracy when targeting his remaining tumor.
Tom couldn’t drive that day and felt some pressure from the frame, but the procedure was easy, painless and side-effect free—all typical for Gamma Knife patients, according to Dr. Wu. “There are, however, late effects that can arise even years after treatment,” notes Dr. Lechan, who will continue to follow up with Tom annually. “The most common is the loss of one or more pituitary hormones in up to 40% of people treated.”
Still, the potential pros far outweigh the cons. “Depending on the type of pituitary tumor,” says Dr. Wu, “the Gamma Knife treatment will usually prevent further growth of 80-90% of tumors.”
And Tom’s overall prognosis is good. “His prolactin remains elevated, but is slowly declining, which is a good sign,” says Dr. Lechan. “Tom has done very nicely with surgery and Gamma Knife radiosurgery, but he may yet develop other complications of this treatment that will require life-long monitoring.”
A path paved with humor + gratitude
Tom has no problem returning for these visits as long as they are necessary. “Dr. Lechan…he is unreal. I love him to death. I feel good most of the time,” he says, though he still has trouble with his sinuses. “He’s incredible too,” he continues, pausing to reflect on his entire multidisciplinary team. “They’re all so well versed in what they do. They’re not afraid to keep digging and diving until they find out what’s going on.”
Along the way, Tom will continue to make lemonade from life’s lemons. “You need to giggle and laugh and make light of things, because if not, life is no fun.” And besides that, “I have lots of opportunities to look up at the sky and thank God for being as good to me as he is.”
